Susan Sontag’s writing gave illness a geography. In Illness as Metaphor, she wrote that everyone who is born holds “dual citizenship” in the “kingdom of the well and the kingdom of the sick.” We may prefer the passport of the well, she observed, but sooner or later, all of us will be required to enter the other country.
I have thought about that passport a lot since my TBI and stroke.
I didn’t just visit the kingdom of the sick, I essentially became a citizen. The strange thing about chronic conditions like brain injury is that you don’t necessarily stay there.
You go back and forth.
There are days when I wake up in the kingdom of the well. On a good day, I can almost forget about the other passport tucked inside my bag. Then my brain can run out of fuel. My body reminds me that it has different rules now. Light begins to appear brighter. Sound starts to hurt. Words disappear. Suddenly, I’m standing at the border again.
Welcome back miss. Your passport, please.
This Passport Has No Expiration Date. There is an assumption that illness is a country you enter temporarily. You arrive. You receive treatment. You recover and leave. Passport stamped, case is closed. Brain injury as a chronic condition, doesn’t work that way.
You may become stronger. You may become more capable of handling and managing life with it. You can learn the language. You may discover shortcuts through certain streets.
You may even spend days, weeks, or months barely thinking about the fact that you have another citizenship. But the citizenship remains.
Chronic does not necessarily mean every day is a bad day. It doesn’t mean every moment is spent suffering. It means the condition has become part of the landscape of your life.
You can have a wonderful day and still have a chronic condition.
You can go on a vacation and still have a chronic condition.
You can do a lot of amazing things while still holding that second passport.
The two lands aren’t as far apart as people might think.
The kingdom of the well is where many people live without thinking much about the expected capabilities of their bodies, easily taking things for granted. For many brain injury survivors, it is also the land of the “before.”
There, you can make a plan and generally assume your body and brain will cooperate with it.
Our country has different customs and its own distinct weather patterns.
Rest is not simply rest. Fatigue doesn’t necessarily mean sleepiness. Any room can become overwhelming. Simple tasks can require planning, and consume energy that no one else can see.
The borders between these kingdoms can move several times in a single day with invisible disability.
Someone can see you in the kingdom of the well and assume you permanently live there.
They don’t know that you may have crossed the border three times already that morning.
Dual citizenship does come with certain strange privileges. You become fluent in two languages.
You become very good at noticing the tiny things that make a day possible. You become aware of a different layer of what being truly human requires.
You become well acquainted with vulnerability.
And you become acquainted with people who live in both kingdoms—and with how the people in those kingdoms treat one another, for better or for worse.
Those of us with this hidden fluency can look at each other and understand. No explanation required.
Holding this type of dual citizenship is exhausting. Neither country completely feels like home anymore. We live constantly traveling between the two.
There are days when you feel like a perfectly ordinary person who happens to have a brain injury. There are other days when the brain injury feels like the most consequential fact about your existence. Neither is completely true. We exist somewhere in between. At the border, with both passports.
There are losses in this land that cannot be made meaningful simply by finding the right metaphor.
The passport is a metaphor. The disability is real.
Metaphor does not make our losses beautiful or turn our suffering into simple lessons. But it can give us another insight into understanding ourselves, and what it means to live with something that doesn’t simply disappear. It can act as a bridge between the two lands. It’s a way for someone who’s unknowingly on one side of the border to begin to understand.
I used to think of recovery in terms of getting my old passport back. I thought there would eventually be a day when someone stamped it: recovered. That there would be a day when I would be cleared to return permanently and exclusively to the kingdom of the well.
But I’m beginning to understand that recovery isn’t necessarily getting rid of the second passport.
It is learning how to carry it. Learning when to use it. Learning when to ask for accommodations. Learning which borders are difficult. Learning which environments are safe. Learning when to rest instead of pretending you’re fine. Learning that needing something doesn’t mean you’ve failed.
I just happen to have dual citizenship now. I have a passport that doesn’t expire. Accepting that doesn’t mean I’m giving up on recovery. It means understanding recovery differently. I can still have a life I didn’t know how to imagine before.
I can still become someone new.
The two lands can coexist. I am a part of both.
And somewhere between them, I keep moving forward, with my passports tucked quietly in my pocket.
# # #
More About Hillary
Comments
Post a Comment